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After takedown

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Posted 6/29/2013 12:32 PM (GMT 0)
Hello. I've been wondering....after takedown, if you no longer have UC symptoms and are free of meds, what else is there to do afterwards? What I mean by that is, I'm sure we won't have to see our gastro dr as often as we did when we had UC, but how do things work afterwards? Like, will we need a colonoscopy (? I don't know what they call it since we no longer have a colon) once a year or so? In my case, I only have my small intestines so will we be examined for that? How do things work? Or is it that we just don't need anymore check ups since we're fine now...? Sorry stupid questions but it's got me wondering.
Posted 6/29/2013 12:35 PM (GMT 0)
We need to get pouch-scopies every year, to make sure it's not got any leaks, and also to check for possible dysplasia or malignancy (rare).
You also need to stay in touch with your GI in case you get pouchitis symtoms, in that case you should go see him/her right away for antibiotics and pouch-scope.
Posted 6/29/2013 8:33 PM (GMT 0)
Not a stupid question at all. I go once a year to my surgeon for a scope. It's just a flexible sigmoidoscopy. There is not much prep...just an enema a couple of hours before the scope. And all drs are different so that can depend. I haven't seen my GI doc since before my surgeries because I just haven't had the need to see her. I have followed up with my surgeon on everything because he told me I can see him anytime. Some surgeons write you off after surgery so that depends too. If that is the case, then you would need to make sure the GI you see had experience with j pouches. You don't want someone poking around up there with little knowledge of a j pouch. That's why I just stick with my surgeon. It's his handy work so I'm trusting him with all that stuff! People who end up with pouchitis a lot need to see a GI doc though....a surgeon isn't going to be too helpful with that. Knock wood, its been three years and I haven't had pouchitis.
Posted 6/30/2013 1:16 PM (GMT 0)
Thanks for informing me about that kind of stuff. I mean, the pouchitis. My surgeon is so busy handling too many patients that he has really no time to explain this stuff. He specializes in UC and chron's disease and he's like the only surgeon that focuses on those diseases so all these people come to him. He's doing surgeries practically every day. Anyway, thanks :) I googled it and found that it can be caused by bacteria. That's kinda scary...so I guess there are risks then. I prefer my GI since he pretty much seems to know me well and understand how my body works and such, but I doubt that he's worked with patients with j-pouches. J-pouch is created from our small intestines, right? And shaped like a "j" so therefore, called j-pouch? If I'm not mistaken.....lol omg

I've been doing pretty well after takedown but I can't seem to let gas out normally like I only let gas out when I'm in the bathroom. Before surgery, when I was suffering from UC, I was doing the same thing. I also couldn't get gas out normally unless I was in the restroom, but from 2 nights ago, I'd fart during my sleep and wake up from the noise! Oh my gosh...so embarrassing...and last night, I had farted a couple times during my sleep as well and I wake up to it each time. It's so weird. I mean, I'm grateful that I can let gas out but I didn't expect it to come out like this lol

How many times do you have a BM now? Do you have to still let out everything before you go to sleep as well? I try not to eat after 6 pm and try to go to the bathroom as much as I can before I rest.
Posted 6/30/2013 1:29 PM (GMT 0)
I've never seen a GI in the 12 years I have had my j pouch. I live in a small town and don't trust local GIs with my post care. I used to get pouchoscopies every year but after year 5 I stopped and now go every three years if I have no symptoms.

Sue
Posted 6/30/2013 1:57 PM (GMT 0)
That's great, Sue :) It's good to know that you're doing well.
Posted 6/30/2013 2:05 PM (GMT 0)
You are still pretty new after takedown so your body will continue to adjust and the gas will become less and less. I can still get lots of gas from time to time but that is definitely diet related. Taking pro biotics can help with gas. Going to the bathroom now is definitely noisy! That just comes with the territory.

I can have as little as 4 bms a day and as many as 10. It really all depends on what I eat. My average I would say is 6 bms a day. I never have urgency. Sounds like you are doing really well. :)
Posted 6/30/2013 2:14 PM (GMT 0)
Yeah I have to say based on what you wrote, even a month out from takedown you sound like you are doing really well! Glad to hear you can even pass gas at night with no accidents. I'm like you in that currently, with UC I never pass gas unless I'm on the toilet.
Posted 7/1/2013 5:38 AM (GMT 0)
Wow, 4 bms is pretty good. I go like 12 times a day but I don't have that urgency I used to have with UC. That's a relief cause I really suffered with that. Have you gained a lot of weight since? I see you had your surgery 3 yrs ago. I read somewhere in a surgery book that it's hard for our system to absorb soon after surgery but that as years pass by our system, without the colon, learns to absorb and learns to act as the colon. I thought it was quite amazing. We can actually live without a colon.

Chris, I totally am like that as well. I just could not pass gas when I had UC unless I was on the toilet. I definitely recommend surgery if your meds no longer work. I mean, you suffer soon after surgery but you heal and if all goes well, it's like you never even experienced surgery. It's as if you're back to your normal self again. Well,I do have to be careful during the night cause it seems I don't have a big accident but when I pass gas in the middle if the night without realizing it and I wake up
In the morning, I sometimes see a tiny bit of an accident. Surgeon says that can't be helped cause they had to take out a lot of my muscle down there due to the cancer polyp. But I'm grateful that I don't have any accidents during the day :) But oh my, that's embarrassing if I'm sleeping with someone I fall for and he hears my farts and stuff...LOL...I'm laughing now but hate for that to happen! (#^.^#)
Posted 7/1/2013 12:24 PM (GMT 0)
I gained back the weight I lost when I was sick with UC and then an extra 15 pounds which I was not happy about! So I hit the gym and changed my eating habits a bit and I lost that extra 15 pounds. So now I'm right at my perfect weight for me. I'm also going to be 45 soon so keeping weight off is more of a challange these days. The small intestine definitely adapts and starts taking on the role of the colon.
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